Ciucco

What a lovely post – thank you for sharing the twists and turns of your journey. I haven’t yet posted here, but I felt compelled to let you know how much I have appreciated your blog and your posts here on the forum. All of the research and knowledge you share are amazingly helpful, and I so appreciate the inspiration you give me. I’m on my fourth trial after failing on Ipi/Nivo and two years in from my Stage IV diagnosis so I’m a fellow rattie and holding hope. And the ketchup topping recipe is a great bonus – – I’ve rediscovered my love of ketchup recently (even started putting it on scrambled eggs from time to time, ala my childhood breakfast :)) and I’m ooking forward to trying it on meatloaf soon!

Take care,
Julie

So happy that you got this pain under control and continue to fight off the beast. It was great meeting you at Angeles – I’m headed back there now after finishing my second trial infusion. This drug is a bit of an sss kicker but hopefully that means it’s doing something!!! Have a good holiday weekend.
Julie

Hi, Kevin: I’m sorry you are going through this and wish you much luck with biopsies should you need them. Celeste has provided great info already and i would just add that i think it’s worth asking your doc about the lesions that the CT is calling out in your liver. The report claims that these are stable but without having a PET CT, you can’t rule out metastic disease at that site. And these are stable based on comparison to what? In fact, could a PET CT help determine if there is metabolic activity in the lung and therefore help avoid a biospsy of that site? I don’t know how sarcoidosis shows up on a PET as it isn’t a side effect I had from my Ipi/Nivo treatments. It might make sense to have your doctor address these questions and definitely do some testing for mutations of your tumors. Wishing you all the best.

Hi, Anon: I’m fairly new to the forum and haven’t yet posted my story, but your post sounds a lot like what I experienced with my melanoma diagnosis. Have you had genetic testing done on the biopsy and/or on yourself to check for somatic mutations? There is a mutation called BAP1 that causes what are often called Spitz Nevis but they are moles that contain BAP1 loss and are actually considered by many as bapomas. These are often difficult to diagnose with pathology and contain melanocytic cells and do in fact often evolve into melanoma – at least that was my exzperience. BAP1 is considered a cancer syndrome gene mutation and causes a number of cancers, including uveal melanoma. Given your family history, I think you would be really smart to get a second opinion and ask for genetic testing. I had a challenging pathology report that sounds similar to yours and it turned out to be stage IIB melanoma. I also was found to have the BAP1 mutation and unfortunately have progressed to Stage IV. I’m in a clinical trial now since immunotherapy didn’t work for me (as it often doesn’t for melanoma with BAP1 mutation that often behaves like a uveal melanoma). Good luck and feel free to reach out I if I can help you with info…. I’m sorry you’re dealing with this and hope that you get good news and a speedy resolution.